The preferred priorities for care document in motor neurone disease: views of bereaved relatives and carers.

Abstract:

:Increasing emphasis is being placed on the need for advanced care planning (ACP) at the end of life. The Preferred Priorities for Care (PPC) document is a patient-held record promoted by the End of Life Care Strategy as an ACP tool to promote discussion and communication amongst patients, family and health care providers. However, little research exists into evaluating its effectiveness or exploring patient and carer views, particularly in non-malignant disease. Because the majority of patients with Motor Neurone Disease (MND) lose verbal communication, early discussion of patients' wishes and preferences, a central aspect of ACP, is vital. This study examined MND patients' bereaved relatives' experiences of using the PPC document and their perceptions about its impact on end-of-life care using qualitative methods. Key findings adding to existing literature were that the PPC document was felt to have little impact on end-of-life care amongst this patient group and that there was a perceived lack of awareness of the document amongst health care professionals (HCPs), in particular hospital staff. This was felt to limit the effectiveness of the document. This has obvious implications for practice, looking at awareness amongst HCPs and ways to improve this situation, particularly in light of the current pressures to meet patient preferences at the end of life.

journal_name

Palliat Med

journal_title

Palliative medicine

authors

Preston H,Fineberg IC,Callagher P,Mitchell DJ

doi

10.1177/0269216311399664

subject

Has Abstract

pub_date

2012-03-01 00:00:00

pages

132-8

issue

2

eissn

0269-2163

issn

1477-030X

pii

0269216311399664

journal_volume

26

pub_type

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